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Re: Probiotics ? No Thanks..

I just remembered that I was drinking a lot of a specific probiotic drink the Summer I had my first flare-up. I don't even know what to think of this. I'm hoping it was just a coincidence but now I have a reason to just ignore all these gimmickey drinks.

Re: Probiotics ? No Thanks..

Thanks for the articles . I find the gut biome to be a very interesting study. It is complex and super important and we are only beginning to understand how it works. I have been dealing with terrible acid reflux for several years. I have suffered a great deal because of reflux. To make it even worse I have an atypical version of reflux that is not well understood and treatments do not work well for.
Just a couple of months ago I was on the verge of getting surgery that is very invasive and life altering. I would not be able to enjoy a simple meal ever again after having the surgery. After surgery I would be on a liquid diet for six weeks. And mush food after that.

Probably due to aspiration of aerosol reflux I developed pneumonia and was in the hospital for a solid week getting IV antibiotics recently. Very early in my hospital stay I noticed that I was not having reflux trouble. This was a great blessing as it is very hard for me to follow my reflux diet in the hospital. It was also hard to believe. I had suffered EVERY day for over a year and now it was like I never had reflux.

After I got out of the hospital (about three weeks ago) I expected reflux to return but it has not. After further thought I realized this was not a big surprise.

During my search for answers to my reflux (trying to avoid surgery) I found a book called The Fast Tract Diet - by Norm Robillard. I found this book to be more helpful than any of the medications I took.
The basic idea of the book is that atypical reflux (also know as LPR) can be improved by a LOW carbohydrate diet. The theory is that a high carb diet feeds bacteria in the small intestine that produce hydrogen and methane . This abundance of gas creates a back pressure that pushes on the valve right above the stomach and forces 'toxic' gas into the airways. The guy that came up with the idea, Norm Robillard, is a microbiologist who figured this out on his own after a brief diet that was low carb and helped HIS LPR. He asked himself "Why did low carb help my reflux?" and this is where his theory came from .

He mentions in the book that SOME people have had reduced symptoms after a course of antibiotics. The antibiotics wipe out the gas causing bacteria. Of course no one can, or should, keep doing antibiotics.

Probably LPR is caused by a number of factors like a poorly functioning lower esophogeal sphincter , poor motility, a distorted, unhealthy micro biome, and who knows what else. Changing the micro biome with diet has helped LOTS of people. There is a great facebook group of people who follow the diet and share experiences.

The reason I talk about all this is to encourage people to keep thinking about their own situation. If I had followed only my doctors advice I would have had surgery by now and likely STILL be suffering - as does happen to some people. After I found the diet was helping me I asked my gastroenterologist "I have been seeing gastroenterologists for over four years. How is it that NO one have ever talked to me about diet?"
His answer "We are not trained in that". It did not seem to bother him that I had suffered SO much and could have been helped by trying a change in diet. He did NOT want to know the name of the book that helped me. He will NOT be telling ANY of his patients about it so they could try it. HE IS NOT TRAINED IN THAT!!

Re: Probiotics ? No Thanks..

Originally Posted by me2

Thanks for the articles . I find the gut biome to be a very interesting study. It is complex and super important and we are only beginning to understand how it works. I have been dealing with terrible acid reflux for several years. I have suffered a great deal because of reflux. To make it even worse I have an atypical version of reflux that is not well understood and treatments do not work well for.
Just a couple of months ago I was on the verge of getting surgery that is very invasive and life altering. I would not be able to enjoy a simple meal ever again after having the surgery. After surgery I would be on a liquid diet for six weeks. And mush food after that.

Probably due to aspiration of aerosol reflux I developed pneumonia and was in the hospital for a solid week getting IV antibiotics recently. Very early in my hospital stay I noticed that I was not having reflux trouble. This was a great blessing as it is very hard for me to follow my reflux diet in the hospital. It was also hard to believe. I had suffered EVERY day for over a year and now it was like I never had reflux.

After I got out of the hospital (about three weeks ago) I expected reflux to return but it has not. After further thought I realized this was not a big surprise.

During my search for answers to my reflux (trying to avoid surgery) I found a book called The Fast Tract Diet - by Norm Robillard. I found this book to be more helpful than any of the medications I took.
The basic idea of the book is that atypical reflux (also know as LPR) can be improved by a LOW carbohydrate diet. The theory is that a high carb diet feeds bacteria in the small intestine that produce hydrogen and methane . This abundance of gas creates a back pressure that pushes on the valve right above the stomach and forces 'toxic' gas into the airways. The guy that came up with the idea, Norm Robillard, is a microbiologist who figured this out on his own after a brief diet that was low carb and helped HIS LPR. He asked himself "Why did low carb help my reflux?" and this is where his theory came from .

He mentions in the book that SOME people have had reduced symptoms after a course of antibiotics. The antibiotics wipe out the gas causing bacteria. Of course no one can, or should, keep doing antibiotics.

Probably LPR is caused by a number of factors like a poorly functioning lower esophogeal sphincter , poor motility, a distorted, unhealthy micro biome, and who knows what else. Changing the micro biome with diet has helped LOTS of people. There is a great facebook group of people who follow the diet and share experiences.

The reason I talk about all this is to encourage people to keep thinking about their own situation. If I had followed only my doctors advice I would have had surgery by now and likely STILL be suffering - as does happen to some people. After I found the diet was helping me I asked my gastroenterologist "I have been seeing gastroenterologists for over four years. How is it that NO one have ever talked to me about diet?"
His answer "We are not trained in that". It did not seem to bother him that I had suffered SO much and could have been helped by trying a change in diet. He did NOT want to know the name of the book that helped me. He will NOT be telling ANY of his patients about it so they could try it. HE IS NOT TRAINED IN THAT!!

WOW, thank you so much for sharing this amazing story and your findings. I am sorry for the tough time you had and glad you found the right solution before it was too late. Thanks God you are feeling better.

If I understand correctly it was a combination of 2 things which healed you: the low carb diet and the treatment with antibiotics ?

In addition to WG I also suffer from collagenous colitis, and in a weired way the combination of specific nutrition plus antibiotics helps me feel better although I can't make it without budezon (a friend to pred, GI steroid, I take them both).

And... we know too well to NEVER trust any dr. Withought checking as much as we can.

Re: Probiotics ? No Thanks..

Alysia,
Yes, I think it was the combination of antibiotics and low carb. Another possibility is that many months ago I started taking large doses of Vitamin D daily as there was compelling information that it could help with LPR. I may never know which of these things is more to credit but I DO know that I was able to get better without surgery and none of the doctors suggested that.

I do remember you have the collageonous colitis. Thats partly why I told my long story. Not long after you developed it I developed it too as was determined by biopsy. I asked the gastro if it was something that could just go away. He said no. This was months ago and I have had no more bouts of it. I took the budesonide for a while too. I still take budesonide as a sinus rinse some times.
It's certainly possible that I still have the colitis but that it is just quiet. I will take that.

I hope these parts of my story can give some encouragement. I had NO hope that my reflux would do anything but get worse. It went on for a long time and it burned my esophageous and lungs. But I stuck to the best information I could find and now, for some reason, it is as good as gone. I know great things can happen for other people too.

Re: Probiotics ? No Thanks..

Originally Posted by me2

Alysia,
Yes, I think it was the combination of antibiotics and low carb. Another possibility is that many months ago I started taking large doses of Vitamin D daily as there was compelling information that it could help with LPR. I may never know which of these things is more to credit but I DO know that I was able to get better without surgery and none of the doctors suggested that.

I do remember you have the collageonous colitis. Thats partly why I told my long story. Not long after you developed it I developed it too as was determined by biopsy. I asked the gastro if it was something that could just go away. He said no. This was months ago and I have had no more bouts of it. I took the budesonide for a while too. I still take budesonide as a sinus rinse some times.
It's certainly possible that I still have the colitis but that it is just quiet. I will take that.

I hope these parts of my story can give some encouragement. I had NO hope that my reflux would do anything but get worse. It went on for a long time and it burned my esophageous and lungs. But I stuck to the best information I could find and now, for some reason, it is as good as gone. I know great things can happen for other people too.

Thanks for taking the time go share your experience and ideas.

This all makes so much sense. I have passed that article on to someone who had major stomach surgery and was told to take probiotics. The article is going to the next doctor’s visit.
As for myself, like many of you, fellow Wegeners patients when we get a flare, we must get on antibiotics. My most recent flare lingered and I was put on a continued dose of antibiotics. Literally, my gut told me I could not handle more probiotics. They were causing as much diarrhea as the antibiotics. So, how to keep the antibiotics in? So simple, two hours after an antibiotic I took a Ginger root capsule. Also, I drank apple juice which is a natural anti diarrhea remedy. These measures combined with careful eating during the duration of the antibiotics got me through WITHOUT touching probiotics. Ultimately, we must listen to what our bodies are telling us.
Masha

Re: Probiotics ? No Thanks..

Originally Posted by me2

Alysia,
Yes, I think it was the combination of antibiotics and low carb. Another possibility is that many months ago I started taking large doses of Vitamin D daily as there was compelling information that it could help with LPR. I may never know which of these things is more to credit but I DO know that I was able to get better without surgery and none of the doctors suggested that.

I do remember you have the collageonous colitis. Thats partly why I told my long story. Not long after you developed it I developed it too as was determined by biopsy. I asked the gastro if it was something that could just go away. He said no. This was months ago and I have had no more bouts of it. I took the budesonide for a while too. I still take budesonide as a sinus rinse some times.
It's certainly possible that I still have the colitis but that it is just quiet. I will take that.

I hope these parts of my story can give some encouragement. I had NO hope that my reflux would do anything but get worse. It went on for a long time and it burned my esophageous and lungs. But I stuck to the best information I could find and now, for some reason, it is as good as gone. I know great things can happen for other people too.

Thanks for taking the time go share your experience and ideas.

Thank you so much for sharing. I didn't know that you also have collagenous colitis. It is one form of microscopic colitis which is also a rare auto immune disease. I know another weggie who has both WG And microscopic colitis. She developped hers a year before I did. So I wonder if there is any connection between the 2 diseases. The other weggie has WG for more then 20 years, started as a teen. I have WG diagnosed for 10 years soon, but it was smoldering many years before and I suspect that the first episode was when I was 17yo. You are also WG veteran for many many years.
In my colitis group they say that some meds can triger a flare and one of the meds mentioned is omperadex/ losec which I took on higher doses of pred. I am not sure it this was my triger.

I am glad your colitis is quiet now. Be careful not to triger it again with bad food. I know that being tempted for just one peach made me miserable for few days of endless toilet visits so I try not to be tempted.

My nutrition is very limited. Can I ask what is the diet that helped you ?

I didnt notice a difference while taking more or less vitamin D, although I never take mega doses.

Re: Probiotics ? No Thanks..

Originally Posted by Masha

This all makes so much sense. I have passed that article on to someone who had major stomach surgery and was told to take probiotics. The article is going to the next doctor’s visit.
As for myself, like many of you, fellow Wegeners patients when we get a flare, we must get on antibiotics. My most recent flare lingered and I was put on a continued dose of antibiotics. Literally, my gut told me I could not handle more probiotics. They were causing as much diarrhea as the antibiotics. So, how to keep the antibiotics in? So simple, two hours after an antibiotic I took a Ginger root capsule. Also, I drank apple juice which is a natural anti diarrhea remedy. These measures combined with careful eating during the duration of the antibiotics got me through WITHOUT touching probiotics. Ultimately, we must listen to what our bodies are telling us.
Masha

Masha, you can try homemade probiotics. If you google it you can find many suggestions and recipes. I think it will be more friendly, safe and tasty to use.
Like in this link for example https://www.healthline.com/nutrition...oods#section11
Just be careful not to eat those which contain too much salt. (Not to hurt your kidneys)

Re: Probiotics ? No Thanks..

I think this is very interesting. I've been a probiotic fan for a long time, however not in the form of pills or supplements. I've only popped probiotic supplements when I've been in Mexico and have felt something Montezuma like coming on.

The way I ingest probiotics is the natural way. I love love love kefir. Plain, unsweetened, yummy, yogurty kefir. It gives me some good calcium (as I'm not a fan of milk) and that way I don't take calcium supplements, it is a natural way to get probiotics and not ones that are manufactured in a factory (or however they make the probiotic pills/supplements), it's credited as one of the factors of the above average longevity of the numerous centurions in the Ural mountains. Another form of natural probiotic consumption is in sprouts. I eat lots of sprouts (radish, sunflower, kale, and more) and the probiotic on them is in the little fuzz that you see between the stem and the new sprout... apparently it's a great way to get your probiotics because it manages to survive through the passage of the entire digestive system, and the most important absorption for health happens to be 'near the end of the line' if you know what I mean. Kefir can't get that far down, nor can pills.

I noticed in the articles that what they're mostly talking about is probiotic supplements, not natural probiotics.
I believe in everything in moderation and probiotics are no exception. I try not to take many pills (of any form) unless they're keep me alive, like Imuran, xarelto, dapsone, etc., but I do believe that the reason probiotics are such a hot commodity and so many manufacturers are trying to get in on the profiteering side of probiotics, is because there is truth to the fact that they are good for us. The trick is to ingest them as mother nature created them (like eating fruit vs drinking fruit juice) and then you're not overdoing it, you're not depending on whoever put the formula together to have done it right, and you're not betting your health on the idea that where they were manufactured was a clean place where mistakes never happen.

That's my two cents and wrong or right, I'm gonna keep eating my probiotics the way nature created them, because they haven't hurt me this far, and I love the taste of the foods they come in.

Hope this post doesn't upset anyone (as I often do, ha ha) and that it throws a different perspective on the idea of probiotics.